Patient & Researcher Blog
Here I aim to capture what I am learning as a newbie researcher from a patient perspective.
Living with a slow growing brain cancer
It is taboo for researchers to talk about their work before it is published.
I think that’s a bummer.
My favorite part about research is learning new things in real time. Here I share my observations as a learner and my n of 1 (personal) findings as a patient.
Note: I started blogging about brain cancer in 2008, at age 29.
I had no background or knowledge about healthcare when I began. Please excuse typos and other misconceptions. What you read here is me in real time, like a time capsule.
There are more than 500 posts here. Use this search to look for something specific. Good luck!
Emails from dead friends
Sometimes I scroll past their numbers with my finger hovering just above the "call" button.
Gliogene: Studying people who have two or more family members with glioma brain tumors
If you and another person in your family have been diagnosed with a malignant brain tumor (e.g. glioblastoma, astrocytoma), you might be eligible for the Gliogene study.
My grandfather has a brain tumor too
I am afraid that seeing my grandfather on hospice, with a similar (if not the same) malady will only remind me of my own mortality. I am afraid I will find it too hard to absorb, and I am afraid that will come off as shallow and self-indulgent.
I got married
We dated for more than a year before I was diagnosed with cancer, and you still take care of me every day. You keep me safe in this world, and when I am with you I have the strength to conquer anything.
No words to describe getting married during cancer treatment
It is hard to think of something to say that will fit within just a minute of time to capture the amazing amount of love I have for a man who essentially saved my life.
You know you have a significant medical condition when...
…You want to go on vacation and your doctor prescribes you an emergency medical kit that includes steroids in case you have brain swelling.
This is what cute looks like: engaged with brain cancer
There will be MRIs. There will be more decisions about continued treatment. There will be times I forget. There will be times when I worry.
What is family?
Upon hearing the news and finding out that I had a "mass" in my brain, my best friend called her dad. He was in town the next day--asking the important medical questions, demanding answers, advocating on my behalf (because I was too out of it to know what was going on).
Trying Depakote
All of this is great if the tremors go away, but I have been on the new drug for a week and I still have tremors--and they are weird. It almost feels like I've had way too much caffeine and I am shaking with excitement, but I am not excited, nor do I have extra energy.